HEATHER TELESCA/CONTRIBUTOR: Alex Blair, 17 months old, lies on a blanket in the living room of his Kenmore home. He was born with Spinal Muscular Atrophy, a fatal genetic disease that destroys nerve cells that control musc Click on photo for larger image

Searching for a cure
By cindi wittcop / [email protected]
Friday, July 30, 2026

Like most expectant grandparents, Lockport resident Monica Roland happily anticipated the arrival of her first grandchild.

When an ultrasound revealed the baby’s gender, Roland couldn’t wait to announce it to her friends, via the Internet.

“Her name is Claire,” the e-mail simply said. It bore only four small words, but the message conveyed a universe of joy. Roland could not have been more excited for her son, Robert, and his wife, Julie, who lived in Colorado but kept close family ties.

When Claire Elizabeth Roland was born May 8, 1999, Julie knew intuitively that something was wrong, but she never imagined that her baby was the victim of a genetic condition that would take the infants life nine months and nine days later.

The Roland family had never heard of Spinal Muscular Atrophy until exhaustive medical tests revealed Claire’s disease at 5 1/2 months. Now, five years later, they are sober experts on the genetic killer that strikes 1 in 6,000 newborn Americans each year.



Read more in the July 30 Lockport Journal.




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